[stanford_status] Trip to Dartmouth Medical Center in Lebanon, NH

John R Larsen john at larsen-family.us
Sat Jul 8 20:35:04 EDT 2006

Hello everyone,

On Friday, July 7th, we drove 94 miles north to Dartmouth-Hitchcock Medical Center in Lebanon, NH.  
Dr. Sara Chaffee, Pediatric Oncologist, wanted to meet with us even though things are still uncertain.  
She said there are no precise answers yet.  They haven't been able to get any "positive" answers from 
tests, which is very unusual.  The tumor is being very "stingy" on giving any results.  Everything they 
have so far is based on negative results meaning they know what it isn't.  Normally tissue responds 
positively to some tests and they know precisely what it is.  Not so this time.  They desire precise 
answers so that they can treat it the best way.

The results of all the staging tests were all negative meaning no signs of cancer anywhere else in the 
body.  The bone marrow was clear.  The spinal tap was clear.  We already knew that the CT scans and 
PET scans were clear.  The edges of the removed bowel were clear meaning no cells were found there 
matching the tumor cells.  At the time the tumor was removed they also took samples of the fluid in the 
abdomen.  There were cells in the fluid matching the tumor cells, which means it is in Stan's body and 
could be anywhere.  This needs to be treated because some of those cells could land somewhere and 
start growing.

The only test that has had any "positive" result was a DNA test done in Boston the week of the surgery.  
That test gave evidence that the tumor is a B Cell lymphoma and that the cells were monoclonal.  This 
test is very sensitive and it is possible that it was contaminated giving false results.  Dartmouth is 
repeating the test.  There is a very slim possibility that a lab error occurred and that this isn't a lymphoma 
at all.  The current thinking is that it is one of two types, lymphoblastic or large cell lymphoma.

The trick is how to treat it.  There is a short treatment and a long treatment based on what type of 
lymphoma it is.  There is a trade off to waiting to begin treatment.  At this point it is better to wait a while 
and try to get more information.  The risk is that some cells in the fluid could land somewhere and start 
growing.  At some point in the future waiting will be a bigger risk than simply starting the treatment.  If 
they can't figure out what it is they will err on the side of caution and most likely the long treatment would 
be selected.

Dr. Chaffee will call us on Monday to check on Stan.  Stan will be having another CT scan next week so 
fluid levels can be compared.  Everything will be sent back down to Boston on Monday to be looked at 
again.  We will be going down to Boston sometime near the end of next week to consult with them.  Next 
week is an information gathering week.  The following week will be a treatment deciding week.

Dr. Chaffee is trying to get as many minds working on this and thinking about this as possible.

As we learn more we will share that with you.

Thanks for your continued thoughts and prayers.

John R Larsen <john at larsen-family.us>

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